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Live, Laugh, Love: Parenting Those on the Spectrum

11 May 2019

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Reading Time: 9 minutes

During Autism Awareness and Acceptance Month we had the opportunity to speak with many amazing neurodiverse people. I am a parent to a child with autism; my daughter is Bubbles the Cat. It’s especially important to me to share how diverse the autism spectrum is. It has been a roller coaster of emotions. We are so incredibly proud of every member of our WomANZ community for their compassion, their understanding and their acceptance. 

Proud Parents

I had the pleasure of speaking with Karsh and ChaosCat about raising a child on the spectrum. The idea of autism being a “spectrum of abilities” compounds while speaking with them however they are all connected at heart. Karsh explained to me how his son, lovingly nicknamed ‘Sid the Goblin’, is incredibly intelligent despite his inability to verbalise his ideas. He learned to read by visualising the letters as images and identifying them together. He uses assistive technology and a picture-based language system so he is able to communicate his needs and wants. We also learned that apparently there is warrant for his goblin nickname. You see, Sid is devious.

Karsh, a circus professional, proudly recalls the time his son pick-pocketed a parent at the school pick-up:

“Everyone knew that his focus was mobile phones and technology and he would sit next to people, or even sit on their laps, if they had their mobile phone out. And he watched for a while and he’d reach over and press buttons… And then he’d take it from them. One of the parents put [their phone] away as he was coming in and he saw that. He went over to her, gave her a massive big hug, just a beautifully big hug, and then he walked off, downloading new games for himself to play on her phone. Not just the fact that ‘I want this,’ but you’re not going to give it to me so I’ve got to figure a way around that. And to do the distraction. For me working with so many magicians over the years, he did it perfectly. Without training.”

ChaosCat expressed to me how her daughter, Fable, was also quite perceptive for her age. Although she is quiet, her mind is working and she is observing the people around her:

“We were kind of stressed out about her social interactions in going into primary school because she’s so quiet and she really struggles with the general social interactions. And seeing her interact with another child and say, “Hi, my name’s Fable, what’s yours?” and making friends was, like, heart-melting for me. You know those little moments make me feel a whole lot better about her being at school. Those interactions can be scary as a mum, sort of not being able to control the situation, and they’re really good moments for me where I always feel a sense of pride and belief that she can do it.”

We Talk Meltdowns

A commonality between us was the dealing of our children’s meltdowns, as well as society’s misconceptions when our child is in the state of overwhelm.

“Meltdowns are extreme emotional and/or behavioural responses to a stressful situation. They are always involuntary. Meltdowns come from prolonged exposure to sensory triggers or cognitive overload without a chance to get away from the overwhelming stimulation.” Sue Larkey, an experienced teacher specialising in special needs education, clarifies the difference between meltdowns and tantrums here.

Fable’s meltdowns are anxiety-focused; they’re inward and withdrawn. However, if she has had a hard day at school, and her sister grabs the iPad, she will scream the house down. It’s an extreme response but it’s the inability to control. She explained how Fable would meow like a cat when she was really anxious because she couldn’t cope with situations. “Sometimes people misinterpret that and they’re like, ‘Oh, look she’s being a little kitten. She’s so cute!’ And it’s like, ‘Yes, she’s very, very anxious. You need to stop talking to her now.'”

Sid the Goblin needs a lot of coaching and therapy to assist him in self-regulating his emotions.

“He used to throw himself on the ground. He used to kick and scream and cry and lash out. He couldn’t handle that emotion. And he couldn’t regulate it. He’s hitting me and trying to get away from me, for me to stop his self-harm.”

It is terrifying as a parent, watching your child lose control of themselves and not being able to do much more than hold them.

With a lot of love and energy, Karsh has helped his son learn techniques like deep breathing. The meltdowns still happen but less extreme. All of us admitted we forget, at times, our children need extra time to process things. They need time to prepare for a change in their schedule. We cannot simply run out to the shops at a moment’s notice; our little ones cannot cope with such quick changes in circumstances. Shopping centers in particular are an overwhelming place for a lot of people with autism, and we are seeing changes happen. Coles now has 256 supermarkets practicing ‘Quiet Hour‘, which offers a low-sensory shopping experience.

I asked our parents for their advice to people in our community who may see a parent and child during a meltdown.

“As the parent, you know what the child needs, you know what’s going on. You know that sometimes you just have to stay with them and go through it. An offer of help might be nice, but I don’t really know if it’s going to be something that they can do. Sometimes, the behaviour is for that attention and so walking past can be good enough,” says Karsh.

“I think with me the biggest thing that I have always struggled with is just to listen. It’s so, so important to just listen to what’s going on. Don’t assume anything because you really don’t know what’s going on. And the parent will know what’s going on. It comes down to having respect for the parent, respect for the child. You know if you offer help and if the parent says, in a huff, or in a seemingly negative tone to you: “No, I’m fine.” Don’t walk off thinking, “Oh how rude!” Just listen, be respectful and if the offer for help is turned down, just walk away,” adds ChaosCat.

Different Not Less

Parents and guardians of special needs children all over the world cry out for help in many different ways. It’s challenging to raise any child but when your child differs from the neurotypical child written about in almost every parenting book, blog or forum, things get a whole lot more challenging for everyone involved.

Every parent experiences exhaustion from daily “kid stuff”, from preparing meals to school to navigating social calendars and teaching life skills.

“It’s very mentally draining having those little extra things that you have to deal with on top of your normal everyday life. And so for me, saying no to social events, or saying no, is really important. I think people need to understand that when we’re saying no, it’s not something that you need to be upset about. It’s just I need to say no,” comments ChaosCat.

Making sure you are not overwhelming yourself or your child is incredibly important.

“The level of stress is always there. That lack of sleep, always having to second guess and prepare. It’s a lot more than what people think. Because, as a parent, we’re not just trying to raise a child. We’re trying to help that child understand the world, and at the same time we’re trying to understand the child’s idea or their vision of the world. 

And so it’s quite a challenging thing to try and do all the things that we need to do. But they’re our children so this what we do. We don’t shun that. These are amazing children. It’s all about autism is about being different, but not less,” says Karsh. [sic]

Financial Struggles

There is also an incredible financial outlay when you have a child with autism, as all three of us noted. Australia does have some support but it is quite minimal. While other children are experiencing extra curricular activities, receiving the latest games or travelling abroad to study, a lot of people with autism will spend all their free time and finances on therapies. As parents we get stressed thinking about the financial responsibilities necessary to assist our children to survive in the world.

“You know. It’s always a stress. Your life revolves around these different therapies! It’s not a choice. It’s not as if we’re just deciding to take our kids to all these different things on a whim. It’s very necessary. The [National Disability Insurance Scheme] is hard to navigate for me personally. Like, I find it really difficult to figure out. I think people have this misconception that everything just gets paid for. Oh, it’s Medicare or whatever it is and it just gets all covered and everything’s all fine. But, it does not run smoothly. And it’s always, well, for me and my family, it’s always a struggle. It just adds up, on top of school fees and camp fees and, you know, excursions and birthdays and then being invited to birthday parties. Cause she had one and it was very exciting. She got invited to her first birthday party, and, you know, that was another thing. It’s just never ending. It’s not a choice,” recalls ChaosCat.

“What my issue is we’re paying almost $500 a week.

We’ve got a team of speech therapists, a team of [occupational therapists]— We’re about to get a musician therapist in as well, to add to that. And they all work under the same roof; they all work together. And that’s his life, that’s three days a week to do this. But there’s a lot of things that the NDIS doesn’t cover and they class as ‘a normal toy’. But, if the child with [autism spectrum disorder]— they usually have sensory issues.

One of those is movement and jumping. They want to move, and they want to jump, and it helps calm them and centre them and trampolines aren’t covered. But for a child with ASD that needs it.

It’s a need. It’s a really, really big need. I just got a cockpit, not because I do sim racing for streaming, but because we’re trying to teach my son road safety from the opposite side. Because he’s so focused on driving games, we’re going to try to teach him how to drive a car on the computer to understand he has to brake for people going across the crossings,” adds Karsh.

We spoke of iPads and their immense value for those on the spectrum for both a way to communicate, a way to engage and learn, and also a way of self-regulation. A very popular app is a meagre $399 AUD and only available on the Apple App store. From our experiences, both iPads and the communicative app are both excluded from funding, remembering that a single iPad is not indestructible and accidents happen.

Karsh wished to share that he is currently unable to work as he can only work during school hours and there is a serious lack of funding to the system where Schools for Specific Purposes are involved. His first school was 40 km away so he had to drive 800 km a week! He only had three hours’ respite a day before returning to collect his son and continue the ongoing therapy. 

The school he is at now took two years to complete and was still under construction during its opening. For a special needs school, that noise and construction would’ve been very disruptive.

I urge you to find out and support those in our community who are creating change in this system in the upcoming Australian Federal Election.

Wishes for the Future

We all have dreams for our little ones when they arrive in our arms but diagnosis can sometimes distort that. However, we always find the smallest triumphs and relish in the everyday accomplishments often overlooked.

“My wish is that people don’t overlook her, and see how strong she is. And I wish that she knows in herself, she has that strength in herself, that she knows she’s got this. I think that’s the big thing with me, just, comfortable and her own sense of self,” says ChaosCat. [sic]

“For Sid, I would say to find people that appreciate him for being different, not for being normal. A big thing which, for me, personally— I found a circus group and in circus there’s a lot of people with ASD. Because they have the quirks, they’re actually accepted. They’re cherished because of the quirks not for being normal,” confides Karsh.

Words of Wisdom

What words of wisdom might we share for a parent or guardian whose child may have recently received a diagnosis of autism?

“After the crying, after everything goes on. Sit down, both people understand what’s going on, and make sure you speak to the therapist or the person who diagnosed so you do understand, so both people are on the same page. Because [there’s] a massive break up of relationships, a massive divorce rate of people with autistic children. Because one parent was on board, one parent wasn’t. Do as many courses as you can get your hands on. There’s a huge amount of courses out there, that are all over the places. Read up as much as you can, do as much as you can. You just got to work together and be on the same side,” says Karsh.

“I would say, arm yourself with knowledge and resources, like Karsh was saying. Also, trust in yourself and your child and you’ll be OK. You know, everything will be OK, you can do it. It’s so overwhelming and some days feel like they’re never going to end—they’re so bad. But it’ll be OK! That’s probably such a simple thing. But sometimes, hearing someone else say that or even just telling yourself that, can make a little bit of difference you know? Even if it’s just a tiny bit of difference. Definitely trust in yourself and your own instincts because you know your child more than anyone else you know. So, I think from my emotional perspective, beside all the logical sort of stuff, very much just trust in yourself,” explained ChaosCat.

“And seek help, everywhere you can,” adds Karsh.

“Yeah, definitely. Ask. Ask for help,” ChaosCat agrees.

Remember autism is different not less.

A special thank you to Karsh the Goblin and ChaosCat for giving me their time and sharing their experiences. A thank you to Tsunderelli for spending so much time transcribing for us. Thank you to PiebyPie for being our amazing editor.

Karsh wished to share the following links for those interested in learning more about life on the spectrum.

Max’s Autistic AdventureMax, an Autistic Journey is a retro style top-down turn-based RPG filled with mini games, monsters and most of all, heart. Developed by Stéphane Cantin, who is just a devoted dad who made a game with his son about his son’s autism.

TEDxTalk – Kristy tells the story of her mission to bring circus to children with autism, and the struggles she has faced on her journey. She talks about the work she does at the Circus Stars school and the significant difference it makes to the lives of the children and families that attend.

Aspect – Autism Spectrum Australia (Aspect) is Australia’s largest service provider for people on the autism spectrum.

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